Longer Term Recovery - Neuro Setbacks

[cristiana]

This quesiton is for anyone who has recovered from neurological symptoms.

 

I often read on celiac posts online that neuro symptoms are often the last to clear up.  I am trying my hardest to stay clear of gluten but the neuro problems persist, two years gluten-free.   They almost seem to disappear, then start off again.   Same things - buzzy ankle, tingling fingers due to ulnar compression/carpal tunnel, which has been properly DXd, and facial buzzing and tingles.  

 

Are there any celiac veterans out there who experienced these setbacks?  Was it always gluten that brought these things back or did you have a hunch that other factors were at play?

[icelandgirl]

I'd love to know the answer as well. I am 100% gluten free. I haven't been glutened since March of last year, but I will have symptoms come up that are similar to before I went gluten free. It makes me wonder if we can have a flare up without consuming gluten.

[GF Lover]

One thing to understand is that other things can activate the Auto Immune system.  Stress, sickness, other AI issues can all activate it.  This in turn can cause some, all or different symptoms to pop up while the AI system is cranked.  Also, remember that perfectly healthy people have aches, pains, tingles, head aches, all kinds of things that just happen and cannot be attributed to any disease or sickness.  

 

I'm not trying to belittle anything any one person is experiencing, but, keep things in perspective.  Also, consider the fact that some damage from Celiac or any AI Disease may be permanent.  Don't think of this stuff as a set-back,  Sometimes the smaller things can be dealt with easier when thinking about your health overall.

 

Colleen

[cristiana]

Colleen - thank you so much for that reply, I find it v. reassuring.   Looking back the latest stuff came along with some stressful hospital tests, a new job and a nasty virus.   You have really helped me. 

 

xx

[GF Lover]

So glad I could help 

[icelandgirl]

I agree...very helpful and comforting reminder Colleen.

[GF Lover]

Here is an easy to read article that explains things better than I.  It's good for all of us to keep in mind.  New (a year or so) Celiacs can obsess about all kinds of things that really mean nothing due to Celiac.  Some people start cutting back foods they eat drastically thinking it is Celiac related when it's not.  

 

The best advice I can give any Celiac is to look at improvements as a whole and realize some things need a lot of time to improve and other things may never improve, but you will eventually find your new normal and work with it.

 

Stay positive girls 

 

Colleen

 

Open Original Shared Link

[cristiana]

Colleen - thanks so much for thinking to post this here.  It is very helpful.  

[GF Lover]

I knew you would see it here.  Hopefully, Iceland Girl sees it too. 

[icelandgirl]

Fantastic! Cristiana, you and I have discussed this cycle of stress before...good reminder.